~ Day by day with RA …

Hindsight

History is filled with tales of people making deals with the devil. From Goethe’s Faust to Daniel Webster and the Devil to Charlie Daniels’ song about a fiddle player from Georgia. Of course history (and tall tales) are written with 20-20 hindsight, but as a modern-day RA patient, I sometimes wonder what deal I have really made with the devil.

Like many time-stressed people who take multiple medications, I use weekly pill reminder boxes to make sure I don’t miss doses of medications. I have two and my husband has two (morning and night) that I fill every two weeks. It’s become a ritual: five yellow pills a day, three of the black-and-white ones, morning and night for another one, this one in the morning, that one at night, once a day for most of the rest. I yearn for the days when I took a multi-vitamin in the morning and that was all.

As I fill our pill boxes, I silently contemplate taking a vacation from the drugs. What’s the worst that could happen? Stroke or heart attack without my blood pressure medications? Debilitating flares from RA? Permanent damage or just transitory? Sometimes the thought of NOT taking all those pills seems almost worth it.

Almost worth it, that is, until you cross over to the other side.

I am resistant to the thought that I might have to add even more drugs to the horrendous cocktail that I already ingest, but let me assure you that during my past severe flare, I ran – not walked – to the medicine cabinet searching for potent narcotics and powerful steroids.

As a fan of thrilling movies, I wonder how well I’d do under the torture that super spies and hero are shown on the big screen to endure with grit and wry humor. As I often tell my boss, anything is easy if someone else does it. I guarantee that if “the bad guys” had a way of inducing a flare like I had last weekend, I’d be the first to sign up and tell them whatever they wanted to know. And as much as I worry about what side effects drugs may have, those thoughts didn’t even enter my head as I scrambled to find something that would relieve the pain I was in.

The 20-20 hindsight of history is also filled with lessons learned about seemingly useful things having dire consequences. Consider lead cups used in the Roman empire, asbestos materials used widely in constructing buildings in the 20th century, Thalidomide used for morning sickness in the 1960’s. All these are examples of seemingly good ideas that had terrible outcomes.

But the fact of the matter is I know that the drugs I am taking have serious side effects. There is potential stomach, kidney, and liver damage; propensity to certain kinds of cancers; and increased risk of a number of unpleasant and harmful reactions. Yet, I take these drugs anyway. Every two weeks I go through the same ritual. Five yellow pills here, three black-and-white ones there.

It makes me wonder what kind of deal with the devil I have made. Am I trading relative comfort today for a potentially desolate future?

I like to say that I am a health activist in my own right, that I make informed decisions along with my health care providers for the best course of treatment.

Of course, there is no such thing as a truly informed decision. Perhaps if I could look ahead 10 or 15 or 20 years to see what damage these drugs will actually do to my body (versus what the disease might do) I might make different choices. I might bear the pain of the flare as opposed to take the steroids. I might accept joint damage rather than an early death from cancer.

But only history has 20-20 hindsight and so we don’t know these things. We have to make the choices we make on what we know today.

For me, that’s one of the hardest things as a patient. You not only have to deal with the disease, you have to make life-changing decisions without enough knowledge.

And so I want to say a “thank you” to all you bloggers out there that share your experiences, your personal information, your insight to treatments and their side effects. These contributions make an enormous difference in the amount of information available to all of us as we face the serious decisions of treatment. This kind of input and hindsight from real people helps us all make the best decisions possible. We can’t foretell the future yet, but we can all benefit from shared knowledge.

I hope that when you look at today in your rearview mirror of hindsight, the memory brings a smile to your face. Thanks for checking in.

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3 thoughts on “Hindsight”

Ahhh decisions, decisions, decisions. You hit the nail right on the head. If only when we got ra we could be handed a looking glass. But alas…that won’t be the case. And yes, we walk a very scary tightrope at times but it is the best we can do at this time. Until maybe, just perhaps, we will have a cure.

I appreciate your words about the back-and-forth of a patient’s thoughts on medication, particularly in having to choose “the lesser of two evils,” and having to choose with less than adequate information.

It’s not a nice thing that we are on medication that is risky, but it IS a nice thing to know that there are many of us that live with making this same choice every day.